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3 years now

meand13others Message
10 Aug 2012, 02:35 PM

I woke up one night 3 years ago with severe pain in my right arm. Thinking I has just slept wrong I went to the couch to watch TV and wait for some Tylenol to kick in. Within an hour the pain was so bad I had to wake up my husband and rush to the ER. While there the pain shot across to my left arm. The doctors had no idea what was wrong with me, but sent me home anyhow. It took 2 weeks for me to get in to see a neurologist. My neurologist is my hero, within 10 minutes of talking to me, he knew what was wrong. He explained the disease and sent me off to the hospital for 5 days of outpatient IV steroid treatments, he also put me on gabapentin, gave me some other pain meds and sent me to physical therapy. PT helped and they sent me home with a tens unit (small unit that delivers electro shocks) So now here I am 3 years later, still in pain and still with weak arms. I take Neurotin which helps a little and I still use my tens unit all the time. In the beginning I was hopeful, after reading that 75% make a full recovery. Now I am starting to believe that I am going to be one of the 25%. I guess there are options to administer medication through injection that will block the nerves and there is surgery. Both of these options sound so very dangerous to me. Anybody here been in this longer than me?
Rescue2 Message
11 Aug 2012, 05:23 AM

Yeah i have been in this since late 04 and mine progressed to paralysis although some function and motor skills have returned i am still considered a high function Quadriplegic as i have loss of nerve function in all extremities, i also suffered through lots of pain until Doctors finally put me on opiates, now i'm doing much better, there is no "over" this its getting through this with your sanity intact it is a genetic mutation that will be passed to any off spring and with each generation the mutation will become more severely affected offspring. Or i should say that is if you have HNA,because i have HNA and Muscular Dystrophy i have been told that there is a 1 in 9 billion chance of another person having these two diseases, and with me they appeared together at the same time and it took a lot of Neurologists telling me i had ALS before i found one who was able to see that not all of the symptoms could be attributed to one disease and started figuring things out and doing genetic tests until he got his answers.